Change search
ReferencesLink to record
Permanent link

Direct link
"DBS means everything - for some time": Patients' Perspectives on Daily Life with Deep Brain Stimulation for Parkinson's Disease
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Occupational Therapy. Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Neuroscience.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
2016 (English)In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 6, no 2, 335-347 p.Article in journal (Refereed) PublishedText
Abstract [en]

Background: Deep brain stimulation (DBS) is an established treatment for Parkinson's disease. However, patients' own perceptions of the impact of DBS on their daily living is not fully explored. 

Objective: We aimed to collect and analyse patients' narratives about their everyday experiences of being on chronic DBS. 

Methods: Semi-structured interviews with open-ended questions were conducted with 42 patients (11 women) who had been on DBS for a mean of three years. The questions were related to patients' ordinary daily life and eventual changes, both negative and positive, brought about by DBS. The interviews were transcribed verbatim and analysed according to the difference and similarity technique in grounded theory. 

Results: From the patients' narratives the core category `DBS means everything - for some time' was established, and supported by the following categories: 1) Relief from invasive tremor. 2) A rescue from cramps and pain. 3) Easier movement swings and more predictable living space. 4) Hard, but compared to previous suffering, bearable adverse events. 5) Parkinson's disease is progressing despite DBS. 

Conclusions: The analysis of the participants' narratives shed light on patients' unique perceptions and perspectives of the impact of DBS on their everyday lives. Patients with advanced PD highly appreciated the positive impact of DBS on their daily life even if this impact is limited in time. For the majority, the relief from the severe parkinsonian symptoms, especially tremor and painful cramps, outweighed the side effects of DBS. The study provided information not readily captured by pre-formulated questionnaires and scales.

Place, publisher, year, edition, pages
2016. Vol. 6, no 2, 335-347 p.
Keyword [en]
Parkinson disease, deep brain stimulation, qualitative research, grounded theory, adverse effects, tient satisfaction, activities of daily living
National Category
URN: urn:nbn:se:umu:diva-124158DOI: 10.3233/JPD-160799ISI: 000378352200007PubMedID: 27003786OAI: diva2:949623
Available from: 2016-07-21 Created: 2016-07-21 Last updated: 2016-07-21Bibliographically approved

Open Access in DiVA

fulltext(159 kB)12 downloads
File information
File name FULLTEXT01.pdfFile size 159 kBChecksum SHA-512
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Hariz, Gun-MarieHamberg, Katarina
By organisation
Occupational TherapyClinical NeuroscienceFamily Medicine
In the same journal
Journal of Parkinson's Disease

Search outside of DiVA

GoogleGoogle Scholar
Total: 12 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Altmetric score

Total: 95 hits
ReferencesLink to record
Permanent link

Direct link